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Dilators

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WendyJE
Dilators

Hi, just wondering how long after you finished treatment before starting to use vaginal Dilators? My radiotherapy nurse said to wait until I've had my first clinic appointment (4-6 weeks post treatment) so just wondering if this is others experience. Not particularly looking forward to it tbh but realise it's necessary. I'm 2 weeks post treatment ending (brachytherapy) and doing okay.

Also wondering about menopause symptoms as had chemo/radiotherapy and been having flushes also up at the loo a couple of times a night but hard to know if these are menopause or treatment side effects! They told me I'd start early menopause because of the treatment but not been mentioned again. Can I assume that 11x chemo, 25 x pelvic radiotherapy and 2x brachytherapy will have killed my ovaries or do they test for this in some way? Sorry the last part of this post should maybe be in the menopause section.

Diagnosed with adenocarcinoma 1/7/19, started chemo 15/7/19, stated radiotherapy 26/8/19. Due x 2 brachytherapy and end of treatment by 6/10/19

Rissag

I started two and a half weeks after my last brachytherapy, I had a pelvic exam that day then they gave me the dilators and told me I had to start using them.i thought that was to soon and pretty uncomfortable.they told me to use them every day, so for the first two weeks of using them I did but I felt like I was just getting irritated in there so now I’m down to 3 to 4 times a week.ive been having pretty bad hot flashes at night too,and vaginal dryness  so I think I’m going through menopause . My doctor said they want to wait a couple of months before they put me on hormone replacement, I guess to give my body a break. I’m not really to sure how they test for it though, maybe a blood test? Or they might just go off your symptoms.

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/10/2019 egg retrieval surgery. 2 eggs retrieved and frozen 5/23/2019. 5 slit laparoscopic lymph node removal surgery and ovary transposition. 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Pet scan results NED 11/13/19
Jazza
Jazza's picture

Hi

I was advised to start with dilators 4 weeks after my last brachy treatment, 3 times a week.  I was very dutiful for the first year despite never really being comfortable with the procedure.  Eventually I invested in a good quality silicone vibrator, about the same size as the dilator that best suited me.  I find the vibrator more comfortable to use.  I don't know if it's as effective as a dilator, so that would be something to ask the medical team.  Just to give some background: I had a RH prior to the chemo-radio so the top half of my vagina has been removed - maybe that makes it easier for me?  I'm more than 2.5 years post treatment and haven't any problems with vaginal adhesions etc.

xx

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

WendyJE

Thanks ladies!

Diagnosed with adenocarcinoma 1/7/19, started chemo 15/7/19, stated radiotherapy 26/8/19. Due x 2 brachytherapy and end of treatment by 6/10/19

Lilypingu

Hi Wendy

I was given my dilator set 2 weeks into radiotherapy and told to start using them immediately, which seems to be quite unusual according to other ladies’ experiences! I did have bleeding at first using them...but that stopped pretty quickly. I’m not sure why I was given them so early, but I now have no issues with having internal exams.xx 

11.9.18:Hysteroscopy/punch biopsies

18.9.18:CC diagnosis-2b

19.9.18:Pelvic MRI

24.9.18:CT pelvic + abdomen/thorax

1.11-24.12.18:4 cisplatin, 32 radiotherapy

10.12.18:Pulmonary embolism

18.2.19:Post treatment check up

28.02.19:Pelvic MRI

02.04.19:3 month check-NED

25.06.19: 6 month check-all ok. 08.10.19: 9 month check. Area of concern found. 17.10.19: Pelvic mri 13.11.19: Pre op assessment 14.11.19: Petscan 26.11.19: Biopsy under GA scheduled
Jen12
Jen12's picture

I also was given mine a week before my brachytherapy.i was told to use straight after brachytherapy and to use at least 3 times a week 

jen

Oonsy

Hi there, I have just been giving mine and have been told to start using them about 2 weeks post rad.

I also just started taking my HRT as my consultant said the menopause can kick in at any time, everyone is different.

If I were you I would get in touch with your team as you shouldn't have to put up with things if theres no need to!

Oonagh xx

Oonsy
  1. Hi there, I have just been giving mine and have been told to start using them about 2 weeks post rad.

I also just started taking my HRT as my consultant said the menopause can kick in at any time, everyone is different.

If I were you I would get in touch with your team as you shouldn't have to put up with things if theres no need to!

Oonagh xx

WendyJE

Thanks, I'm due to see oncologist in a couple of weeks so will see what he says about menopause/hrt. 

Diagnosed with adenocarcinoma 1/7/19, started chemo 15/7/19, stated radiotherapy 26/8/19. Due x 2 brachytherapy and end of treatment by 6/10/19

Oonsy

Great, keep me posted as it's always useful to hear another consultants views!!x

slicknic

I was told to start the dialator 4-6 weeks post treatment as well, but when they did the pelvic exam at that appointment I bled quite a bit so they told me to hold off for another 4 weeks. I was pretty scared of it myself. I used lots of lube and the first time it was hard to get it in but it got easier with each use. 
Yes, the hot flashes are a sign of menopause. Technically if you don't menstruate for 6 month you're in menopause but 4 months after treatment I asked my primary care doc and she put me on the lowest hormone replacement. I'm supposed to take it until I'm 50. It's to help keep my bones strong as radiation weakens them and premature menopause does as well. I like the meds as the hot flashes are much better and I sleep better. 

WendyJE

Saw the oncologist yesterday and he said I won't get a scan until 6months post treatment (had originally been told 3months) so am one month post treatment and another five to wait!!  They are also referring me to a menopause clinic to deal with the 'early menopause'.

They didn't do an examination but said they will at the next appointment so I better get in the habit of using these blasted dilators. Have had feeling of constantly needing to pee and discomfort after I do, since having brachy - doctor said that's normal because when they inserted the brachy rods there's no way to avoid the bladder also being hit by the radiotherapy.

Diagnosed with adenocarcinoma 1/7/19, started chemo 15/7/19, stated radiotherapy 26/8/19. Due x 2 brachytherapy and end of treatment by 6/10/19

Izzzy76

I was told to use vaseline tampons for the first two weeks, just regular tampons with vaseline on it, this would help heal the tissue.

after two weeks of using those tampons ( just at night) i am supposed to start using my dilators. I was given tje plastic ones but bought a set of silicone dilators instead.

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Mousehouse
Mousehouse's picture

i was told by my oncologist that the silicon ones are not as effective at breaking down the scar tissue so i stuck with the hard plastic ones-not too bad and now its like

1)get up, 2)floss teeth 3)clean teeth 4) floss foof(obviously the foof flossing is only weekly now for me !!!)

 

Izzzy76

Lol foof floss

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Rissag

Wendy, I’m a couple months on of using the dilators and still experience that bladder discomfort after using the dilators, it so weird and annoying 

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/10/2019 egg retrieval surgery. 2 eggs retrieved and frozen 5/23/2019. 5 slit laparoscopic lymph node removal surgery and ovary transposition. 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Pet scan results NED 11/13/19
Play_Pretend
Play_Pretend's picture

I started having sex again, two weeks after brachy (advise of doctor). I also never stopped having sex with my husband, during treatment. I did not want my vagina to close up. So i kept at it and its good and open. A little bit narrowed at the top near the cervix. I use size 3 dilator, and push that all the way in. It does hurt a lil, but i wiggle and turn the dilator untill its all in. Then i leave it there for 30 minutes. I do this every other day.

I ocasionally have a hot flush. My gyn-onc said that by the first external beam radiation, the ovaries get fried. Theyre just very sensitive. My cervix is still inflamed and i still have some discharge, but not huge amounts like i had before, when i was diagnosed. 

March 2019:

-Tumor discovered staged at 2b, squamous cell. No lymphnode involvement.

April/may 2019:

-Chemoradiation 5x/23x and interstitial brachy 4x

August 16 2019:

-First check up all clear, NED

November 2019:

- Second checkup: All clear (NED). Some hard tissue is felt, pap taken to be sure. Probably scar tissue.

God promises to make something good out of the storms that bring devastation to your life

- Romans 8:28

Izzzy76

I am affraid to have sex. Anyone else feel this way too? 

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019

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